My doctor shamed me for getting tested

[Guest]

And for the record...I do use condoms...and I only top...but surely you realize that adding PreP to that is a good thing?

 

If you always use condoms and only top, then you really should weigh the odds of contracting HIV versus the odds of being harmed by the PrEP medication/Truvada. Both are small, but the odds of becoming infected as a top wearing a condom are really small. Of course, if you get side-effects, you can just stop. But rare serious effects, or unknown long-term effects can happen as well. Despite what Madison Avenue may try to tell you, medications can lead to problems...

[LADoug1]

I only have unprotected oral sex. I always use condoms for anal. I am in the process of starting to take PrEP. Kaiser runs a good number of tests before prescribing PrEP and there is also one-on-one counseling. I'm a bit torn about starting the regimen as the risk from oral sex is so small and PrEP can have side-effects. As for price, because my income is low I was given a grant by Patient Access Network Foundation (PANF) which will cover all out of pocket co-pays. But I'm still deciding.

[+ nycman]

For the record I agree with lots of what's been said on this thread.

 

Thanks Unicorn for your earlier post on defending the perhaps heavy handed and clumsy doctor mentioned.

It saved me 2 hours of typing and proofreading. Misguided?...maybe. Malpractice???...I almost pissed myself.

 

Also, thank you for pointing out the risk/benefit profile of PreP. I'm very capable of doing that analysis.

Now with the new NEJM article on what I'm calling "Pulse PreP" I think the benefit is outweighing the

risk, even for a low risk patient like myself. In truth, of course we need more data to really know that,

but I'm willing to take a chance at this point.

 

A lot of how each of us views my insurance company's requirements depends on your view of insurance

companies in general. I recently attended a lecture by an ex-high level administrator for a huge national

insurance company. Basically what he said was, "doctors and patients are idiots, they think the insurance

companies care about the patients! Are you KIDDING ME? They care about keeping their premiums high

and their expenses low....NOTHING ELSE!. You must start any analysis of an insurance company's

decisions with that fact in mind". Harsh but true.

 

With that in mind, I stand by my analysis of my insurance company's policy on PreP.

[+ quoththeraven]

If you always use condoms and only top, then you really should weigh the odds of contracting HIV versus the odds of being harmed by the PrEP medication/Truvada. Both are small, but the odds of becoming infected as a top wearing a condom are really small. Of course, if you get side-effects, you can just stop. But rare serious effects, or unknown long-term effects can happen as well. Despite what Madison Avenue may try to tell you, medications can lead to problems...

 

Second. Truvada/PrEP's usefulness under those circumstances is marginal at best even without getting into possible unknown or unexpected effects.

 

I only have unprotected oral sex. I always use condoms for anal. I am in the process of starting to take PrEP. Kaiser runs a good number of tests before prescribing PrEP and there is also one-on-one counseling. I'm a bit torn about starting the regimen as the risk from oral sex is so small and PrEP can have side-effects.

 

I'm comfortable with the risk from unprotected oral because the best guess statistically is that it is so low (and so difficult to separate from other acts since most people aren't only engaging in oral) as to be unquantifiable. That isn't the same as zero, but it's pretty darn close.

 

For some people, frequency might make a difference irrespective of the low risk, but if, say, the risk is .01 in 10,000 exposures (.00001), you'd need a lot of exposures to move the dial to a point I'd consider an unreasonable risk.

 

Of course, what I consider a risk I can accept and what you do may be different, but I am generally pretty risk averse.

 

A lot of how each of us views my insurance company's requirements depends on your view of insurance

companies in general. I recently attended a lecture by an ex-high level administrator for a huge national

insurance company. Basically what he said was, "doctors and patients are idiots, they think the insurance

companies care about the patients! Are you KIDDING ME? They care about keeping their premiums high

and their expenses low....NOTHING ELSE!. You must start any analysis of an insurance company's

decisions with that fact in mind". Harsh but true.

 

With that in mind, I stand by my analysis of my insurance company's policy on PreP.

 

I spent much of my legal career trying to shield employers from the mistakes and bureaucracy of insurance companies, albeit more often with regard to retirement plans than health plans. Insurance company 401(k) products were almost always more expensive than similar products straight from a mutual fund unless the employer wanted to offer more then one company's funds. The insurance company had to build in profit for itself somewhere.

 

However ... this requirement is perfectly rational and as Juan has said, intended to prevent undetected seroconversion and possible resistance. It may well be a condition of FDA approval. (I assume Unicorn would be able to confirm or deny that.)

 

Also, anyone who thought healthcare insurers were primarily interested in patients rather than profits would be very naive indeed. I do not believe this is a prevalent view among doctors and patients. All the doctors I know hate insurance companies and feel they get in the way of good medical care.

[Guest]

Also, thank you for pointing out the risk/benefit profile of PreP. I'm very capable of doing that analysis.

 

Well, the benefit of PreP is well known and documented. I don't know how one can determine the risk, because that data just isn't out there. This is the data of risks from the CDC:

http://www.cdc.gov/hiv/policies/law/risk.html

Estimated Per-Act Probability of Acquiring HIV from an Infected Source, by Exposure Act*

Type of Exposure Risk per 10,000

Exposures

Parenteral3

Blood Transfusion 9,250

Needle-sharing during injection drug use 63

Percutaneous (needle-stick) 23

Sexual3

Receptive anal intercourse 138

Insertive anal intercourse 11

Receptive penile-vaginal intercourse 8

Insertive penile-vaginal intercourse 4

Receptive oral intercourse low

Insertive oral intercourse low

Other^

Biting negligible4

Spitting negligible

Throwing body fluids (including semen or saliva) negligible

Sharing sex toys negligible

 

According to them, condom use reduces risk by 80% (I would have thought it reduced the risk by more than that, but I'll go by official numbers). They didn't say if the insertive anal was for circumcised or uncircumcised men; maybe it's an average, but if my recollection is right, circumcised men have about 1/5 the risk of uncircumcised. Anyways, with a condom it looks as if the top's risk comes out to 0.5 per 10,000 per sexual act. That can be quantified, and multiplied by the number of times the guy has sex. But what's the risk of PreP over time? No way to get good numbers on that. According to them PreP reduces the risk by about 96%, so the risk of transmission comes down essentially to zero with both PreP and condoms. I'm guessing that when they say "low" for oral sex, they mean 1 in 10,000 or less.... Of course, any sores or STD would change that number.

[+ nycman]

Thanks for the detailed numbers. But as you pointed out numbers become less meaningful the more you analyze them.

 

Circumcised, uncircumcised, sores, no sores, rough sex, sweet tender loving, 5 hour long sex, 5 second sex, partner viral load undetectable, partner viral load off the charts.....so many variables!

 

Numbers like the ones above matter when you're dealing with mass public health issues.....and NONE of the sexual ones are zero. And there are millions confounding variables.

 

And none of them matter when you're the ONE that seroconverts. I'm choosing my path, a top, who wears condoms, and uses Pulse PreP.

 

The numbers are interesting though...receptive anal intercourse is riskier than sharing needles with another drug user....I would have gotten that one wrong on the test!

 

I do think it's funny that with regard to the risk you say the "data just isn't out there"...and then present an entire CDC table of data on the risk.....grin

 

ahhh wait....I just re-read your post for the 100th time.....you're not trying to say the data on risk from sexual activity isn't out there!

 

I think what you're trying to say is that the data on the risk of PreP isn't out there!....now your post makes sense!

 

In the words of Emily Litella, "Nevermind...."

 

For the record, the studies did look at and report adverse events in the patients on PreP. Granted it's not long term, but there is some data.

 

And for those playing along at home...PreP is not harmless.

[Guest]

In the words of Emily Litella, "Nevermind...."

[ny2222]

Just to through a little curve ball (so to speak) into the PREP thing, ie: Intermittent Dosing...it was mentioned above...here is a reference.

http://betablog.org/demand-prep-shows-high-efficacy-ipergay-trial/

definitely a game changer for those that aren't active all the time.

 

The company that makes the drug also has a program for cost sharing for the CO-PAY

 

Also post above post on condom effectiveness seems to be what the CDC says also (about 80+% so that is also kind of sobering.

My general thought is if you are active, like to bottom then you should strongly consider PREP.

 

ny

[Floyd_Taylor]

I'm sure this post will stir up a hornet's nest but here goes anyway.

 

First, full disclosure. I've been on PrEP for 15+ months. I've never missed a dose. I'm proud to be a #TruvadaWhore.

 

If taken daily, no one has EVER seroconverted while on Truvada. The Kaiser study and the Magnet study were the most recent to confirm this. The side effect profile is well known since Truvada has been around for almost 15 years. The most common side effect is gastric upset which goes away within the first week or two of starting. The other most common risk is kidney involvement. The doctor will test kidney function every 3-6 months and if there is signs of kidney problems, you stop and kidney functions return to normal. In about 90% of the cases, after a few months off, most people are able to return to PrEP without further incidence.

 

As far as testing, I am tested every 3 months for HIV as is the guidelines. I am also tested for all STIs every 3 months. This includes oral and anal swabs. Unless you are using a condom for oral sex (who in the hell does that?), if you don't do an oral swab you are at risk for not catching cases of gonorrhea. The rectal swab will catch cases of gonorrhea or chlamydia from urine tests.

 

http://www.aidsmap.com/STIs-will-be-missed-unless-gay-men-have-rectal-and-throat-swabs/page/1420875/

 

As far as condom effectiveness, the CDC says that they are actually only 70% effective at preventing HIV transmission, not 80%. Maybe that is part of the reason why we still have 50,000 new cases of HIV every single year in this country in spite of the condom messaging.

 

http://www.hivandhepatitis.com/hiv-aids/hiv-aids-topics/hiv-prevention/273-hiv-sexual-transmission-hiv-sexual-transmission/4984-cdc-researchers-publish-estimate-of-effectiveness-of-condom-use-for-gay-men

 

One of the safest things you can do to prevent HIV transmission is to have sex with someone who is positive-undetectable. Both the PARTNER and the Opposites Attract study show that it is virtually impossible for someone who is undetectable to transmit the virus.

 

As far as Truvada cost (and I am speaking about in the US here), every private insurance company I know of will cover it. And for assistance with any copay or deductibles you may have, Gilead, the manufacturer, will cover up to $3,600/year of those expenses. For those people who don't have any insurance and who earn less than 5X the Federal Poverty Limit, Gilead will provide the drug free of charge. And there are other resources to assist for others who might need other financial assistance beyond those costs.

 

One of the best resources for any information about PrEP is in the PrEPFacts facebook group (https://www.facebook.com/groups/PrEPFacts/). They have been cited as a resource by the World Health Organization and hosted several breakout sessions at the HIV Prevention Conference hosted by the CDC several months ago.

 

We know PrEP works. We know it is more effective than condoms at preventing HIV transmission when taken daily. We are seeing the results in SF as the new cases of HIV are coming down.

 

http://www.sfexaminer.com/sf-records-all-time-low-in-hiv-infections-deaths/

 

It works. There is no doubt.

[Guest]

 

As far as condom effectiveness, the CDC says that they are actually only 70% effective at preventing HIV transmission, not 80%. Maybe that is part of the reason why we still have 50,000 new cases of HIV every single year in this country in spite of the condom messaging.

 

http://www.hivandhepatitis.com/hiv-aids/hiv-aids-topics/hiv-prevention/273-hiv-sexual-transmission-hiv-sexual-transmission/4984-cdc-researchers-publish-estimate-of-effectiveness-of-condom-use-for-gay-men

 

It's interesting that we both have links to what appear to be reputable sites, and they come up with different figures (not just for the condom efficacy). It's very unscientific of me, but I find it difficult to believe that the reduction in risk with condom use is that low. I have personally never had a condom break. I wonder how it gets transmitted in the absence of condom failure. You may be quite right that more people should be on Truvada. Your figures seem to imply that Truvada may be worthwhile for a larger group of people than I previously thought. It would be nice to have studies documenting long-term consequences, though.

[Floyd_Taylor]

Dawn Smith is the CDC's expert on condom effectiveness and she is the one who has been saying 70% and has been saying it for at least several years. She first reported it at CROI (Conference on Retroviruses and Opportunistic Infections) 2013. It was the first study of condom effectiveness since 1989. But in 1989 the report was also 70%. So that number is unchanged really in 26 years.

 

http://www.hivandhepatitis.com/hiv-aids/hiv-aids-topics/hiv-prevention/4038-croi-2013-consistent-condom-use-stops-70-of-hiv-infections-says-cdc

 

The 80% figure you are quoting I believe relates to condom effectiveness against HIV transmission in vaginal intercourse, not anal intercourse. It is 80% vaginally, but only 70% anally. That is mostly because condoms were not designed and never meant to be used anally. We've been using them because that's all we have. And it is better than nothing. But it isn't "safe" sex. It is merely "safer" sex.

 

Truvada is as close to "safe" sex as we have now. As I've said, and as every study has shown, no one who has taken it as directed every day has ever seroconverted. The prn dosing of the French study showed a reduction of 86%, which is still better than condom usage.

 

In fact, as far as people on PrEP, or people who are TasP (Treatment as Prevention -- HIV +/undetectable), having sex without a condom is not considered unsafe sex anymore according to the CDC. They now refer to it as condomless sex, not unsafe sex.

 

As far as long-term consequences, we know those. Truvada was approved for HIV+ patients in 2002. It is hardly a new drug. It's risk profile is well studied and understood. And long-term risk for PrEP can be avoided by frequent periodic testing which is part of the protocol. Any kidney and/or liver (to a much lesser extent) is picked up during routine screening and if detected, the drug is stopped and function is returned to normal very quickly. There are some reports of slight bone density loss which is easily compensated for with including a daily Vitamin D pill (a significant number of people are Vitamin D deficient anyway).

 

And we are sadly aware of the long-term consequences of seroconverting. Medically, the consequences are serious but manageable. There are even studies now suggesting that HIV+ patients are starting to live longer than similar HIV- patients assuming they receive competent medical care. This is because they are seeing their health care providers every 3 months. As opposed to most men who don't see a doctor until they have a problem that takes more effort to cure. People on PrEP will also have that same benefit of improved doctor/patient relationships.

 

Now it the most serious consequence seems to be the shaming and stigma that far too many of our negative brothers heap upon our positive brothers. I know of positive men who are told they should just kill themselves. People use the term "clean" on the apps, as if being positive is dirty. I've personally had positive men tell me on Scruff or A4A, "I'm positive, undetectable. But if you don't want to meet me because of that I understand". The rejection they have suffered is palpable. And it is disgusting to me.

 

Yes, a vastly wider group of people should be on PrEP. There is no doubt in my mind. Nor in the doubt of virtually every AIDS service organization in the country. And there is certainly no doubt in the minds of the CDC.

 

Or in the words of Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases, at this year's National HIV Prevention Conference:

 

"The science has spoken," Fauci concluded. "There can now be no excuse for inaction."

[Floyd_Taylor]

And here's a use for PrEP that will really blow your mind. I also know of women who are on PrEP. Their male partner is positive (most frequently because of intravenous drug use). The partner is +/u but as added protection the woman goes on PrEP to conceive. I know of several children who have been born because the families feel secure enough that the mothers will not seroconvert and they become pregnant.

[Kuriousity]

Oh fuck your doctor. Just go find a quality lezzie MD--she won't bat an eye if you get tested.

[Floyd_Taylor]

The best advice I ever got when coming out was given to me by David-sf. He told me to find a doctor who was knowledgeable about lgbt health issues and that you felt comfortable talking about any issues. I wasn't comfortable with my doc at the time so I changed docs and it has worked out perfectly. If you aren't comfortable talking to your doctor about ANYTHING, it's time to change doctors. If my doctor and I could sit down and have a clinical, non-judgmental discussion about risk and risk mitigation strategy during fisting as if we were talking about the weather, that is comfortable. I had to change docs when mine left practice 6 months ago. My new doc was a bit hesitant to do the anal and oral swabs for STI cultures but I insisted so he did. He did the research and now it is a standard part of his practice. The days of listening to Dr. God and following whatever they say are gone. It is a partnership but in the end, you are the boss.

[rvwnsd]

I just looked up my insurance company's policy for covering PreP with Truvada.

 

They require a documented negative HIV screen every 3 months.

 

What a pain in the ass!

 

Seems to me that they're just trying to deter people from PreP so they don't have to pay for it.

 

Anthem Blue Cross/Blue Shield and UnitedHealthcare both require a full blood panel, including HIV screening and liver/kidney functionality tests. The HIV screening requirement should be obvious: it is intended to make sure the patient is still HIV negative. The other screening is to ensure Truvada is not doing any harm to your kidneys or liver.

[Juan Vancouver]

Floyd, thank you for your in dept and knowledgeable contribution.

 

We are at a moment in time in HIV prevention and treatment that will see a similar polarization as with climate change. People concerned with cold scientific facts, supported by serious organizations will have to adapt to the new paradigm. Those who recalcitrantly refuse to analyze and accept the facts will become denialists, holding on to their trauma induced fears.

 

Hopefully we will all slowly adapt to what we now know and will take action.

 

We are living in an amazing time!

[Floyd_Taylor]

Anthem Blue Cross/Blue Shield and UnitedHealthcare both require a full blood panel, including HIV screening and liver/kidney functionality tests. The HIV screening requirement should be obvious: it is intended to make sure the patient is still HIV negative. The other screening is to ensure Truvada is not doing any harm to your kidneys or liver.

 

Exactly right. The HIV screening is required every 3 months. The kidney (done with a BMP or CMP) and liver screening (done with a liver function test) is recommended every 6 months. I figure while they have the tourniquet and are drawing blood, what's one more vial? Same with checking all STIs at the same time.

 

There was a quote at the National HIV Prevention Conference a couple of months ago that every doctor needs to adopt. Sadly, it is what was missing here: "the doctor needs to approach his patient in his white coat to treat, not in a black robe to judge". If I get any judgment from a doctor, I will quickly set him straight. If that doesn't work I will quickly get a new doctor. We have to be our own advocates. There is no one else.

 

You don't want to be the case a friend of mine told us about. He, like many of us, has the fact that we are on PrEP in our online profiles and offer to provide info to anyone who asks. A young guy contacted him on Grindr, but he didn't need any info. He just wanted to talk. He had asked his doctor a year ago about PrEP, but his doctor shamed him about needing it and wouldn't prescribe it. And last week the young man seroconverted. He now faces a lifetime of being positive because of this doctor's judgment and incompetence. Don't let any doctor ever judge you. Don't become like this guy. We can get as close to zero as possible. PrEP is key to that fight. TasP is key to that fight.

 

Juan, thank you for your comment. That is why I also send everyone to the PrEPFacts group on Facebook. It is appropriately named. It is all about facts. Not theory, not rumor, just solid, evidence-based facts. Among the posters are people such as Dr. Robert Grant, one of the lead researchers behind PrEP. We have leaders of the fight to get PrEP in Canada, Australia and the UK. It is a 12,000 member global community all committed to one thing: winning the fight against HIV and doing it with the evidence.

[Floyd_Taylor]

I have frequently compared those still clinging to the "condoms only" message to sufferers of Stockholm Syndrome. HIV has held us captive for far too long. We have been through much with this plague. We have had the message that "condoms are the only way" for so long and so many people have had it drilled into their very core that any challenge to that is like challenging who they are. It takes time. But the science is clear. We now have the tools, finally, to start winning this battle. To drive us to zero. And that is what we all want. Let's use the tools.

[LookingAround]

Floyd you are a refreshing breath of reason facts and wisdom.

[LADoug1]

I'm sure this post will stir up a hornet's nest but here goes anyway.

 

First, full disclosure. I've been on PrEP for 15+ months. I've never missed a dose. I'm proud to be a #TruvadaWhore.

 

If taken daily, no one has EVER seroconverted while on Truvada. The Kaiser study and the Magnet study were the most recent to confirm this. The side effect profile is well known since Truvada has been around for almost 15 years. The most common side effect is gastric upset which goes away within the first week or two of starting. The other most common risk is kidney involvement. The doctor will test kidney function every 3-6 months and if there is signs of kidney problems, you stop and kidney functions return to normal. In about 90% of the cases, after a few months off, most people are able to return to PrEP without further incidence.

 

As far as testing, I am tested every 3 months for HIV as is the guidelines. I am also tested for all STIs every 3 months. This includes oral and anal swabs. Unless you are using a condom for oral sex (who in the hell does that?), if you don't do an oral swab you are at risk for not catching cases of gonorrhea. The rectal swab will catch cases of gonorrhea or chlamydia from urine tests.

 

http://www.aidsmap.com/STIs-will-be-missed-unless-gay-men-have-rectal-and-throat-swabs/page/1420875/

 

As far as condom effectiveness, the CDC says that they are actually only 70% effective at preventing HIV transmission, not 80%. Maybe that is part of the reason why we still have 50,000 new cases of HIV every single year in this country in spite of the condom messaging.

 

http://www.hivandhepatitis.com/hiv-aids/hiv-aids-topics/hiv-prevention/273-hiv-sexual-transmission-hiv-sexual-transmission/4984-cdc-researchers-publish-estimate-of-effectiveness-of-condom-use-for-gay-men

 

One of the safest things you can do to prevent HIV transmission is to have sex with someone who is positive-undetectable. Both the PARTNER and the Opposites Attract study show that it is virtually impossible for someone who is undetectable to transmit the virus.

 

As far as Truvada cost (and I am speaking about in the US here), every private insurance company I know of will cover it. And for assistance with any copay or deductibles you may have, Gilead, the manufacturer, will cover up to $3,600/year of those expenses. For those people who don't have any insurance and who earn less than 5X the Federal Poverty Limit, Gilead will provide the drug free of charge. And there are other resources to assist for others who might need other financial assistance beyond those costs.

 

One of the best resources for any information about PrEP is in the PrEPFacts facebook group (https://www.facebook.com/groups/PrEPFacts/). They have been cited as a resource by the World Health Organization and hosted several breakout sessions at the HIV Prevention Conference hosted by the CDC several months ago.

 

We know PrEP works. We know it is more effective than condoms at preventing HIV transmission when taken daily. We are seeing the results in SF as the new cases of HIV are coming down.

 

http://www.sfexaminer.com/sf-records-all-time-low-in-hiv-infections-deaths/

 

It works. There is no doubt.

Another possible side-effect is osteoporosis. I was tested and ready to start PrEP but was told I had a predisposition for osteoporosis (osteoporena). In weighing the pros and cons it factored heavily into my decision not to start the pros. Just going to continue to practice safe-sex as I have for the last 35 years.

[Floyd_Taylor]

You are correct Doug. I did point that out, but perhaps not enough. But that is why many (most?) of us are on a Vitamin D supplementation. Any observed bone loss is minimal (1%), and reverses itself mostly when Truvada is stopped. And adding Vitamin D supplementation (along with Calcium) can offset some or all of this risk. But a patient, in consultation with his doctor, may make the decision that they are at too high of a risk with too little benefit to go on PrEP. But if they are not 100% compliant with condoms, the adverse affects on osteoporosis if someone seroconverts is even worse. So the benefits of not converting for at risk patients must be weighed as well. It is an individual decision. PrEP isn't the answer for 100% of gay men. For the vast majority, I believe it is. But each individual needs to make that assessment, in conjunction with their doctor, weighing all the risks and benefits. But we need the providers not to judge us for making the assessment at all. And shaming from a provider is NEVER, EVER acceptable. Fat shaming doesn't work. Sex shaming doesn't either.

[Juan Vancouver]

Not to mention that if someone is a high risk patient, having mild side effects during his use of Truvada, are infinitely better than having to deal with the effects of being positive FOR LIFE.

[Floyd_Taylor]

Not to mention that if someone is a high risk patient, having mild side effects during his use of Truvada, are infinitely better than having to deal with the effects of being positive FOR LIFE.

 

But we can always hope they won't be dealing with it for life. Hopefully, maybe, possibly, someday in our lifetime, they will find an actual cure. Please let it be so. Until then, we have to plan as if it will be for life. But one can always hope.

[Floyd_Taylor]

Truvada comes off patent in December 2017. Teva Pharmaceuticals is already producing a generic and selling it through two companies to patients in England, Canada and Australia. It is also approved for sales in France and South Africa and I believe it is the Teva generic for sale there. The Teva generic I believe runs about $40-60 dollars a month, but I could be off on the cost a bit. I can ask my aussie friend on the exact cost. They run the Australian program. Hopefully, the Australian government will officially approve it. They are meeting with him today (go get 'em Phil).

[Floyd_Taylor]

The Australians can either get their prescriptions through Green Cross Pharmacy from Swaziland or AllDayChemist from India. But both are selling the Teva generic. So when Gilead's patent goes off generic, Teva will be well positioned to file for a generic in the US quickly since they are already manufacturing it elsewhere.